2.2: THE SOCIAL ORIGINS AND EXPRESSIONS OF ILLNESS

The social origins and expressions of illness

One of the tenacious assumptions of biomedicine is that disease can be conceptualized as a discrete entity¹. Each of the identified health conditions listed in the accepted compendium of recognized diseases, known as the International Classification of Diseases (ICD)², be it AIDS or autism, and every specific case of disease expression in an individual patient, is understood in biomedicine as an objective, clinically identifiable part of material reality, a thing-in-itself. Even if disease is outside of patient awareness and consequently the patient suffers from no experiential symptoms (e.g. hypertension or diabetes), the physical existence of the disease as an isolatable part of nature is accepted. Consequently, in normal, day-to-day practice, whether it involves examination and diagnosis, patient care and treatment, or clinical research, biomedicine is guided by a confident conceptualization of diseases as distinct, discrete and disjunctive entities that exist within individual human (or other) bodies. Diseases, in short, have in biomedicine an “aura of factuality”³. Thus, based on many years of work in medical settings, Good (p. 70)⁴ comments that he has been struck again and again by “the enormous power of the idea within medicine that disease is fundamentally, even exclusively, biological.” Further, diseases have an existence that is seen as separate from the social groups and social contexts in which they are found. As Gordon (p. 28)¹ summarizes, in biomedicine what is ‘natural’ is beyond the sphere of social influence . . . In medicine it is basically believed that disease follows its own rules, neither those of kings or slaves . . . Disease is essentially an individual problem and is systematically abstracted from social context.

This approach to biomedical disease has been under challenge from medical anthropology for several decades.⁵ Central to this challenge is the needed transformation that Ronald Frankenberg^3,12 has termed “the making social of disease.” The goal of this chapter, which honors Frankenberg’s contribution to the social science of health, is to review his argument and its relevance for reconceptualizing disease in social context.

Three processes in the health domain

In calling for an alternative approach to disease, Frankenberg differentiated three processes in the health domain. The first involves the making of disease, which entails the doctor or other health care provider assembling signs and/or symptoms and constructing a biological (or psychiatric) diagnosis. Rather than the clearcut, objective pathway leading directly from recording signs and symptoms to the making of a diagnosis (as expressed in the ideal biomedical account of the process), doctors must, in fact, engage in a highly constructive process involving the creation of a disease from a welter of differentially clear evidence. The capacity to engage in this process begins in medical school, long before a medical student sees his/her first patient. Notes Good (p. 70)⁴:

Learning medicine is not simply the incorporation of new cognitive knowledge, or even learning new approaches to problem-solving and new skills. It is a process of coming to inhabit a new world.

Good’s point here is that a central achievement of medical school is teaching students to see the human body with new eyes, or with what Foucault⁶ termed the medical “gaze.” In anatomy, this entails “training the eyes to see structure where none was obvious” (p. 74)⁴. In diagnosis, it involves putting together pieces to formulate a credible explanation of recorded signs and symptoms of disease. Rather than a straightforward course, diagnosis requires attention to some information and the ignoring of other information, a unification of scattered “facts” (drawn variously from patient self-report, the report of significant others attached to the patient, direct doctor observation, possible consultation with other health professionals, the use of basic examination tools like stethoscopes, input from electronic machinery like EKGs or scans of various sorts, and diverse types of laboratory test results), and the organization of these facts to fit the definition of an established disease.⁷ Through this complex process, disease cases are constructed but the multiple creative and interpretive acts this requires are denied (even while doctor skill in finding the truth hidden in the shadows is celebrated). With reference to asthma, one of the fastest growing diagnoses, for example, Willems (p. 107)⁸ points out:

This construction occurs not only at the level of the doctor but elsewhere in the pathway to diagnosis as well. For example, blood or other tissues regularly are drawn from patients for laboratory analysis. Commonly, if patients are actually told of the outcomes of their tests, they are given limited accounts expressed in numerical terms or in descriptive terms that doctors select to present the numbers in a way they think patients will better understand. But what actually happens to the samples once they are drawn from the patient only to return as findings? Based on interviews with medical laboratory staff, Singleton⁹ reports considerably greater uncertainty and construction than patients realize. For example, one laboratory worker noted the following about tests for malignancy (p. 93):⁹

The problem in the lab now is that people want black and white—it’s cancer or it’s not—however this is rarely the case. In the lab most things are somewhere in the middle, they are hard to define. I hate them. It is easy to see cancer or normality but the gray areas are a problem.

Affirming the notion of medical gaze, another laboratory worker told Singleton (p. 8)⁹, “it takes a trained eye” to see cancer in many medical specimens. Understood in this way as constructed processes, diagnosis, laboratory assessment, and other aspects of medical practice are unavoidably open at various points to influence from the “cultures” of the medical professional (including national, regional, ethnic, medical, family and other heritages). Grasping this point fully leads rapidly to the destabilization of official accounts of diagnosis as a scientifically guided process; for it is at the same time as much or more a culturally guided process as well. Exemplary is Martin’s¹⁰ now classic account of menopause as a medical diagnosis. Two cultural themes, fairly clearly derived from economic production, appear to structure biomedical understanding of menopause and menstruation. On the one hand, menopause is described in medical textbooks and medical school classes as a breakdown of the authority structure of the body. Expressing this breakdown of authority, “the ovaries become ‘unresponsive’ to stimulation from the gonadotropins,” “the hypothalamus begins to give ‘inappropriate orders’,” “follicles ‘fail to muster the strength’ to reach ovulation” (p. 42).¹⁰ On the other hand, descriptions of menstruation often have the tone of botched production. Observes Martin (p. 46)¹⁰, “[m]enstruation not only carries with it the connotation of a productive system that has failed to produce, it also carries the idea of a production gone array, making products of no use, not to specification, unsaleable, wasted, scrap.” In a culture, such as that in the US, that privileges economic production and in which the very mission of society is sometimes said to be business (e.g. as in Calvin Coolidge’s famous statement^a), it is not surprising to find business conceptual models hegemonically diffused through society generally. What is important here is that such notions of clearly particularistic cultural origin serve as the building blocks of biomedical thinking.

Following Foucault⁶, we have come to understand something of how medical perception, and hence disease definition, changes over time, and the relationship of these changes to wider socio cultural transformations. As a result, diseases of the past (e.g. revolutiona, drapetomania, dysaethesia aethipis, onanism^b) are no longer accepted as bonafide diseases, diseases of the present may not be diseases for subsequent generations, and diseases that have not yet been imagined await future “discovery.” Diseases, as social constructions, change because society changes. The advance of medical technology contributes significantly to this process, penetrating new bodily barriers, significantly magnifying body locations, and opening up new worlds to the clinical gaze. Medical schools, in turn, are places for learning how to see disease (in X-rays, blood test results, CT scans, and other measurements and images of the body). The assumption is made in biomedicine that, as contrasted with patient reported symptoms, the numbers and other findings generated by medical technology are unambiguously neutral and rigorously objective, devoid of cultural input. As Noble¹¹ (p. x) stresses:

Our culture objectifies technology and sets it apart and above human affairs. Here technology has come to be viewed as an autonomous process, having a life of its own, which proceeds automatically, and almost naturally, along a singular path. Supposedly self-defining and independent of social power and purpose, technology appears to be an external force . . .

Hidden in our social construction of technology as a cultural category is the entire process of human decision-making about where our energies should be applied in technological development, who controls the funding and implementation of new technologies, who operates and determines the way (and, as regards medicine, upon whom) technology is actually used, and who interprets the use or (in the case of medical technologies) meaning of its product (e.g. abortion). These are not neutral arenas isolated from contested ideas or unequal players. Rather, they are some of the social environments in which power, expressed both as ideology and as action, is manifested in the health domain. In short, each of these moments in the technology process are, in Frankenberg’s (p. 206)¹² words, contexts in which “continuous and pressing problematic relationships between individuals and groups of differential power [compete] unequally for resources.”

As cultural formations, not only do biomedical clinical understandings vary over time but over place as well. Biomedical thinking is shaped by its national setting, as is illustrated by Payer’s¹³ penetrating comparative analysis of medicine in four countries: France, Germany, Britain, and the United States. According to Payer, French biomedicine, with its strong tendency toward abstract thought, results in doctor visits that are much longer than in German biomedicine. French biomedicine also places a great deal of emphasis on the liver as a key locus of disease, including complications such as migraine headaches, general fatigue, and painful menstruation. Conversely, German biomedicine regards Herzinsuffizienz, or poor circulation, as the root of a broad spectrum of ailments, including hypotension, tired legs and varicose veins. Both German and French bio- medicines rely more heavily than the US counterpart on the capacity of the immunological system to resist disease and therefore both systems deemphasize the use of antibiotics. Further, they were much quicker than US biomedicine to develop an acceptance of complementary and alternative medical systems, such as naturopathy, homeopathy, hydrotherapy and extended stays at spas in peaceful, park-like surroundings. In contrast, US biomedicine relies much more than the biomedicines of France, Germany, and UK on invasive forms of therapy, such as caesarean sections, hysterectomies, breast cancer screenings, and high doses of psychotropic drugs. In comparison with these other biomedical traditions, US biomedicine manifests a pattern of aggression that seems in keeping with the strong emphasis in American society on violence as a means of solving problems—a pattern undoubtedly rooted in the “frontier mentality” that continues to live on in what has for the most part become a highly urbanized, post-industrial society. In this sense, the “war on cancer” and the “war on drugs” are symbolic cultural continuations of the war against Native Americans that cleared the frontier for white settlement.

In sum, as Good (p. 53)⁴ has argued, “disease is not an entity but an explanatory model,” it is a unit for grouping and understanding why individuals get sick and specifying what condition they are suffering from. This is not a denial of the material reality of biology, nor of the real effects of pathogenic agents and other disease causing entities. How we think about their health effects, how we group and label them, the meanings we invest in them, and how we act on this construction (i.e. the making of disease), however, is not specified in biology. It is a cultural process.

The second process in Frankenberg’s schema involves the making individual of diseases, that is, the development of patient consciousness about and experience with being sick. Part of biomedicine involves helping patients to conceptualize their symptoms (or even a lack of symptoms) as a biomedically verified disease, or disputing patient claims to unrecognized disease as with medically presented folk illnesses, like soul loss or spirit possession.¹⁴ At the same time, recognition of ‘illness’ (defined as patient conception and experience) as different from disease (defined as doctor perception and conception) allows analysis of disjunctions in the doctor/patient relationship.^14–17 As Frankenberg (p. 201)¹² notes

The physician takes blood and looks at X-rays and seeks other signs independent of patient consciousness. He reserves the right to himself to decide whether or not to reveal what he thereby finds . . . [T]he western physician seeks in his contest with patients to alienate from them their very biography; their construction of the meaning of their own situational life project as well as the part of it which brings them to consultation.

As this statement makes clear, patients are not blank slates upon which to inscribe the ideology of biomedicine; they come equipped with a range of ideas, beliefs and emotionally charged concerns about health and illness. Consequently, part of the work of practicing medicine consists of convincing patients that their ideas and understandings in the health arena are subjective and thus suspect, whereas those of biomedicine are scientifically grounded and thus incontestably authoritative.

Various studies have noted that doctor–patient interactions frequently reinforce hierarchical structures in society at large by stressing the need for the patient to comply with a social superior’s or expert’s judgment. Although a patient may be experiencing job-related stress that may manifest itself in various diffuse symptoms, the doctor may prescribe a sedative to calm the patient or help him or her cope with an onerous work environment rather than challenging the power of an employer or supervisor over employees. Doctors, after all, practice medicine not social change, and hence their recommendations are overwhelmingly medicalized. However, they are not therefore neutral. Nor do they necessarily address what often is “really” bothering patients (e.g. economic woes, tensions on the job, interpersonal conflicts, victimization, discrimination). As Waitzkin (p. 9)¹⁸ points out:

Professional-client encounters are not the only way that order is achieved in society, but they are one way. When patients present problems that have roots in the social context, doctors generally offer some form of assistance but rarely express contextual criticism.

The making individual of disease, in short, involves clinical acts of privatization, with diagnosis and intervention focused at the individual level, whatever the social origin of the disease in question. The making individual of disease, like the making of disease itself, is a cultural process, but one that reveals even more clearly than the making of disease the structures of social relations in society. As Frankenberg (p. 200)¹² observed, in medicine “the social processes paradoxically operate in order to individualize.”

At a higher level of abstraction, the same processes involved in the making individual of disease involve the claiming of new experiential and behavioral territory for biomedical intervention, a practice that has been called medicalization.¹⁹ This practice entails the absorption of ever- widening social arenas and behaviors into the jurisdiction of biomedical treatment through a constant extension of pathological terminology to cover new conditions and behaviors. Health clinics, health maintenance organizations and other medical providers now offer classes on managing stress, controlling obesity, overcoming sexual impotence, alcoholism, and drug addiction, and promoting smoking cessation. One engine driving medicalization is the profit to be made from “discovering” new diseases in need of treatment. Medicalization also contributes to increasing social control on the part of doctors and health institutions. Like other aspects of the making of disease, it serves to mystify and depoliticize the social origins of personal distress. As Waitzkin (p. 41)¹⁸ observes, medicalization transforms a “problem at the level of social structure—stressful work demands, unsafe working conditions, and poverty—into an individual problem under medical control.”

Finally, Frankenberg asserts the importance of making social of dis- ease, which entails both the revelation of the structure of social relationships that shape the making of disease and the social roles, behaviors, locations and messages involved in the making individual of disease.

First, revealing the making social of disease, which for Frankenberg is a fundamental mission of medical anthropology, involves research and analyses that help to uncover the part played by and nature of the social relations active in the making of new diseases or the converting of old ones to new purposes. The initial construction of the disease (later called) AIDS, for example, is illustrative. Historical analysis of the beginning of the epidemic suggests that the first reports of this life threatening disease triggered a process of social construction involving presenting AIDS as a gay plague.²⁰ On July 4, 1981, the CDC’s Morbidity and Mortality Weekly Report carried an article entitled “Kaposi’s Sarcoma and Pneumocystis Pneumonia among Homosexual Men—New York and California.” This linkage of a rare cancer with a rare pneumonia in a geographically dispersed population defined by a socially vilified sexual orientation was startling. The story was picked up immediately in both the New York Times and the Los Angeles Times, and soon found its way into the mass media throughout the country. But epidemiologists and other health researchers were puzzled by the epidemic that appeared to be breaking out around them. Whereas it was clear that the disease was linked to a breakdown in the body’s natural defense system, the cause of immunosuppression was unclear. Was it the result of environmental conditions, dietary practices, a promiscuous fast-lane gay lifestyle, or the inhalation of amyl or butyl nitrite poppers to enhance sexual or dance-floor arousal? There was less uncertainty, or so it seemed, about who was becoming ill. The new disease complex was portrayed as if it singled out and attacked only gay men, particularly those with promiscuous lifestyles. Ultimately the term gay-related immune deficiency (GRID) was coined to label the new disease. Later the burden of being labelled as a risk group was extended to other socially marginal groups, including drug users, the lovers and sexual partners of drug users, and Haitians. Eventually, however, it became undeniable that AIDS was infecting diverse populations and that it had been doing so from early on in the epidemic. The damaging stigma of AIDS, however, was already ingrained in the popular imagination.

The making social of AIDS^21–25 has involved historic and ethnographic analysis to reveal the relationship between the spread of the disease and the ways it has been portrayed and responded to in light of reigning structures of inequality. It has been shown that AIDS tends to spread “along the fault lines of . . . society and becomes a metaphor for understanding . . . society” (p. 2)²⁶; in so doing, it has exposed the “hidden vulnerabilities in the human condition” (p. 128)²⁷. In other words, while certainly a biological phenomenon, AIDS cannot really be understood only in biological or clinical terms. AIDS, the disease, interacts with human societies and the social relationships that constitute them to create the global “AIDS pandemic,” that is, the global distribution of the disease and the social response to it in particular groups and populations. Glaring social disparities (e.g. majority versus minority, wealthy versus impoverished, dominant versus subordinate populations) in the distribution of AIDS, as well as access to AIDS treatment, have typified the epidemic.

Second, the making social of disease involves a critical deconstruction of the making individual of disease using the lens of social contextualization, specifically contextualization in terms of disparities in medicine and in society generally. Moving from biological to social aetiology, the making social of disease includes assessment of the social conditions (including features of the physical environment that reflect social conditions) that directly or indirectly put individuals at heightened risk for disease, social differences in health care quality and access, the biology of inequality (e.g. low stature as a result of malnutrition), and the social construction of medicine as practice, as institution, and as ideology, including the social functions of medicine in society. For example, numerous medical anthropologists^28–30 have pointed to the fundamental importance of structural violence, discrimination and stigma, in the generation of no small part of the suffering that finds expression as symptoms presented for biomedical intervention. The term “oppression illness” has been used in some medical anthropology analyses to focus attention on the social origin of these types of health complaints.²⁸ Oppression Illness (OI) is used to label the chronic, traumatic effects of experiencing social bigotry over long periods of time (especially during critical developmental periods of identity formation) combined with the negative emotional effects of internalizing prejudice. Oppression illness, in other words, is a product of the impact of suffering from social mis- treatment based on bigotry and, at some level, accepting blame for one’s suffering as just retribution for someone who does not deserve better treatment. Individuals who suffer from OI, it is argued, not only have very low self-esteem, but in addition embrace, at least to some degree, prevailing negative social stereotypes about their ethnic group, social class, gender, or sexual orientation. As this description implies, OI is a type of stress disorder. The source of stress is being the object of wide- spread and enduring social discrimination, degradation, structural violence and abusive derision. OI, in other words, is a product of an oppressive social environment and a structure of oppressive social relationships with multiple reinforcers of significantly devalued individual and group worth.

This pattern of symptoms is seen commonly, for example, among drug users; indeed illicit substance abuse may represent a form of self-medication for OI. The end result, however, is that individuals are put at heightened risk for a range of other health problems including AIDS. For example, an African American injection drug user interviewed during Project COPE in Hartford, CT³¹ explained her drug use in the following way:

I come from Middletown and at the time there was not too many Blacks or Hispanics there. From kindergarten on up to until eleventh grade, the children really severely picked on me. I mean really bad. They had to take me out of classrooms because the children constantly picked on me so badly that they’d disturb the teacher . . . I couldn’t take school buses. I couldn’t go to any school functions or anything. I just couldn’t take it any longer and that is the way I grew up . . . I don’t remember how I started to smoke reefer but I remember how it made me feel, the courage it gave me to be able to . . . stand up to people . . . I started with reefer but then, many years later, I stared [injecting] cocaine . . . I was seven and a half months pregnant. I didn’t even think about the baby at that time. I just wanted out. My purpose was to OD [overdose] off the ‘caine . . . [But] I totally forgot about the suicide and I just started liking the feeling it was giving me . . . I think it was the feeling that I’d been looking for that I could feel like everybody else, normal, that was the feeling ‘caine gave me.

Ironically, while drug use has been defined as a disease by major public health institutions, incarceration for petty crimes related to drug use rather than effective drug treatment is the standard social intervention for many street drug users.

Conclusion

Although often portrayed as fixed entities in nature, a review of medical history reveals the dramatic changes that occur over time in the array of prevalent diseases and how they are conceived. Even with an awareness of such change, biomedicine focuses narrowly on the biology of disease. Anthropologist Ronald Frankenberg has called attention to the making of disease and the making individual of disease within biomedicine as processes that isolate a vital aspect of sickness from analysis, namely the social dimension in the creation, spread and treatment (or lack of treatment) of disease. His corrective for this shortcoming is a call for the making social of disease, allowing it to emerge in the thinking of health social scientists and health care providers alike as a social product that reflects and reproduces patterns of social inequality. This critical reconceptualization of disease is a significant challenge for the practice of medicine.

CITATION/ATTRIBUTION

Singer, M. (2004). The social origins and expressions of illness. British Medical Bulletin, 69(1), 9–16. https://doi.org/10.1093/bmb/ldh016 

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